Monday, March 17, 2014

The themes of systemic lupus - I think they're spot on!

I love the findings in this latest investigation into lupus! It's so refreshing to see the issues that are oh-so-present in my daily life with lupus grouped and identified accurately, and then spelled out in black and white. And I particularly appreciate that the research produced two positive responses to life with lupus, particularly the concept of Gaining Resilience, which I have found to be invaluable in my 13 1/2 years as a lupite. Check out some of the snippets I've included below, but be sure to read the entire LFA article here. The entire article explains in detail the factors that contribute to each of these concepts. I'm sure you'll find yourself nodding along as you read the examples!

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Adults With Lupus Found to Have Common Themes in Experiences

A recent review of lupus quality of life studies found five common themes that describe the experiences of adults living with lupus. Using a method called thematic synthesis, Dr. Allison Tong of the University of Sydney and her associates from Australia were able to group the responses of nearly 1,400 people from 46 studies into five concepts:

Restricted lifestyle

Disrupted identity

Societal stigma and indifference

Gaining resilience - (a positive!)

Treatment adherence - (another positive!)

Restricted lifestylerelated to factors that interfere with daily activities and mood. Disrupted identityresulted from the uncertainty or emotional burden of lupus. Societal stigma and indifference developed when others trivialized the illness, when patients felt ostracized socially, or when family and friends became overprotective or intrusive.

Gaining resilience was built on optimism acquired when patients accepted their limitations and developed positive attitudes to cope with their new reality. Emotional and physical support offered by family, friends and doctors also helped people with lupus to live a ‘normal life’. They felt more in control and empowered when they remained active and socially engaged. Being informed and involved about the impact of lupus, along with the mutual understanding of others who shared similar experiences of living with the disease, was found to be important to gaining resilience.Treatment adherenceimproved when people believed the medications they were prescribed were having a positive effect on preserving health, while good rapport with doctors boosted adherence as a show of respect and trust.

The investigators conclude that education, psychosocial (offering social and emotional support) and self-care programs will help to improve the mental resilience of adults with lupus so they can develop better methods to cope with the disease, advocate for themselves, and increase their participation in activities of daily living. These factors will help people with lupus achieve better treatment and secure the best possible quality of life.

2 comments:

Sara - I do so wish I could get my PMR peers to read your blog! The first 3 are the same for us too - but it is so difficult to get them to see 4 and 5! PMR isn't life-threatening and maybe that is why they whinge so much! Darn it - you don't often get PMR in your 20s and then be faced with getting on with life and having children. We've all had pretty good long and healthy lives first - maybe it's that that makes them so resentful. But loss of identity? Absolutely - especially when pred makes you fat!!!!!!

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.